In 2010 we got a diagnosis of ulcerative colitis for our son Isaac who was then 27 months old. For a year and a half we had been concerned about his persistent soft stools. Now that we're going down the road of living with IBD in our house, we want to be able to share our story, connect with similar families or individuals, and increase our awareness of the experience of others.

Some of our related interests are diet, kids and families with IBD, and discussing and sharing experiences.

Tuesday, June 28, 2011

health insurance

Are hearts sank for a while when we were notified by Medicaid that we longer qualify and that after next month we will no longer get taxpayer sponsored insurance. A closer second look eased our initial reaction though, because we still qualify for CHIP coverage, which is still affordable for us now. In fact, as you can imagine, we're really happy to advance out of poverty if that's what you want to call it. But that first notice really caught us, since our budget stretches pretty thin. And we know that a) coverage for our family costs us more than $1000 per month more than what we currently pay, and b) with Isaac's health care, we'd definitely be paying a lot for doctor and pharmacy copays and I'm sure we would be maxing out deductibles each year. Well, as it is, we'll do our best to get to that bridge and cross it when we do.

Also, I am being a little pessimistic. If Isaac continues in remission for years, our extra costs would be limited by his medicine costs and routine visits only.

Monday, June 20, 2011

writing about writing

Weblogs are a good way to share experience. As for IBD in our home, I am encouraged by readers who write, readers who only read, and other writers who don't even read. Lately we were included in a list of IBD blogs and websites. Also, I am continually reading about old patients, new patients, stories new and old, and anything else IBD in forums and in other places which list randomly 40 at a time on the right side of my blog....

I definitely recommend blogging for the journal aspect, for connecting with others in similar situations, and for helping others down the road. As you share your experience, it can really help someone else in a similar situation.

We are still weaning Isaac off of the prednisolone. And everything seems to be going just fine as it has been for a while....

Last week was Vacation Bible School at our church, and Isaac and his brother had a good time each day. Yesterday, they helped lead some of their songs during church, and how delightful it was to see little Isaac doing his body movements and gestures for the songs... Actually I had quite a moment, since one of their songs (How Great Thou Art) was one of my late grandmother's favorites. I am a bridge between her and them, and maybe it is all but impossible to fully relate the connection, but how delightful to see her progeny celebrating the same song that moved her decades ago.

Thursday, June 9, 2011

Isaac and Imuran, so far so good

Isaac continues to do well. His latest bloodwork showed lower 6-TG levels than his doc wants to see, so we are slightly increasing his consumption of Azathioprine (Imuran). Instead of every other day doses he is now getting 5 doses a week. We continue to taper his prednisolone. We have another doctor's appointment tomorrow.

6-TG is a derivative of thiopurine. There is a lot to learn. If you're interested, you can start with this article which deals specifically with IBD. In that article, you, like me, might get a little excited about giving such a drug to a young'un. But having said that, our doctor understands and is concerned about the risks and we are monitoring Isaac closely while he is introduced to this drug (for the first several months) to make sure his body tolerates it just fine.

The poop scoop: We remain in a phase of normal poops.